vacation souvenier--LE :(

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mags20487
mags20487 Member Posts: 1,591
edited June 2014 in Lymphedema

So I just returned from my postponed due to DX 25th anniversary trip to Mexico and noticed some swelling in my hand.  I finally got a chance to call my LE therapist  and saw her on Monday... she says I now have stage 1 lymphedema.  I was so sad to hear those words come out of her mouth.  I really thought that I just would not get it as I breezed through the surgery, chemo and rads without incedent.  I wore my sleeves on the plane and did not know that I should have been wearing at least a sleeve on my left arm all the time.    Tomorrow I go back for my first wrap which I am dreading.  The sleeves themselves are so uncomfortable and make me feel like I am in a constant hot flash.  Any suggestions on how to minimize the uncomfortableness of these compression garments and the wrap?  I can only imagine comments I am going to get now from people who do not know you but assume it is ok for them to ask "what happened to your arm?"  

Oh well could be worse I keep telling myself.

Maggie

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2012

    Oh Maggie, what a drag. You take a vacation and end up with this. :(

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  • AnnetteS
    AnnetteS Member Posts: 180
    edited May 2012

    I am so sorry that happened. 

    Although I have never gotten used to the wrapping, I wear a sleeve on my LE arm and I have gotten very used to it.  Unless it is hot or humid outside, the sleeve does not bother me too much.  Everytime I wear one on my at risk arm, it is very uncomfortable, which reminds me how much I used to hate the sleeve.  

    So, my point is, as you get used to it, it MIGHT not be as bad or uncomfortable.....

    Hugs!

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited May 2012

    Maggie--I am so sorry.  But Stage 1 can be reversible.  The wrapping isn't that bad.  You may get fast results.  Keep us posted on your progress.  When people asked what was wrong with my arm I would just say it was to control swelling.  I always wore a stockinette over my short stretch bandage and it looked as if I were in a cast.  So I did not get so many comments.  Becky

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  • cooka
    cooka Member Posts: 278
    edited May 2012

    Sorry Mags:(  I wear my sleeve all day (in Phoenix) and believe it or not, i have gotten kinda used to it.  It took some trial and error to find a good fitter and the right sleeve, but once through that it has been ok.  Emotionally though, it was very difficult to know that I had a chronic condition to deal with after everything else. The support on here is great, and finding a good LE therapist is a big help too.  Hang in there, you will learn how to manage this just like you have managed everything else.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited May 2012

    Mags, If it helps, I just learned how to wrap even though I don't need to. It is in my toolkit for emergencies.

    Guess what I had a emergency the other day. My finger web was red from my glove rubbing so I wrapped and the red went away.

    So far,I find the wrapping more comfy than wearing the dreaded sleeve but then I am just relaxing with it on. Maybe if I was moving around or working I would not like the inconvience of the gauzed fingers. etc. 

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  • KittyKitty
    KittyKitty Member Posts: 150
    edited May 2012

    You were supposed to wear a sleeve on your arm all the time before you had any lymphedema?

    I have not heard of that before.

    Is there any chance it is just general swelling from being in a hot tropical climate, and eating out a lot?

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2012

    Maggie, the full time wearing of a sleeve with early lymphedema is based on the Nicole Stout study where she measured women post op and if they had a 3% increase in volume, she put them all in a sleeve/gauntlet and most women got better. She put all women in compression, so it's unclear if things would have gotten better.

    But, if you now have visible swelling, compression is a good idea, for the swollen area, along with learning MLD, exercises and wrapping.

    Drink tons of fluids and lots of deep breathing and you caught this early. You'll get a handle on it quickly!

    Kira

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  • mags20487
    mags20487 Member Posts: 1,591
    edited May 2012

    got wrapped thid morning and then went to work...not too bad so far.. see the therapist again on friday for more mld and re wrap...I CAN DO THIS!!! Thanks ladies you are the best

    Maggie

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